Thursday, June 30, 2016

Looking Back on 10 Years of Palliative Medicine

by Drew Rosielle

July 1, 2006 was the day I became a staff palliative care physician at the Medical College of Wisconsin, after having completed my fellowship there. So it's been 10 years I've been doing this, and I've been reflecting a little on what's changed in those years. So here are my thoughts. I don't want to pretend all of these are profound, most of them have been said by others before, and better, but things have changed in these 10 years - I've changed - and I decided to write a little about it. Much of this is just my own perceptions of things, a lot of them are my own misconceptions probably, and I don't want to pretend to be speaking for the field, or anyone else but me. I should note that my clinical work is ambulatory palliative care, and inpatient consultation, not hospice work, which undoubtedly influences some of these perspectives.
  • Clearly, the burning platform in contemporary healthcare that created the need for palliative care, still exists, and probably is even more burning than before. Patients with advanced illness are all too often lost, poorly informed as to what's going on/what's realistic, overwhelmed, suffering in all dimensions; families too. When we're involved, I think we help mitigate this somewhat, but the need remains huge, and is getting huger. Yes, huger is a word. 
  • Along those lines, I remember having this vague sense of professional vulnerability and territoriality 10 years ago. Worries we were going to do so well we were going to put ourselves out of business! All these other doctors would learn how to do family conferences and dose opioids-like-a-non-idiot and then we'd have nothing left to do. Good god that was so naive. I think part of it was also a growing pain worry that we weren't a real specialty, we were impostors, we don't have well-defined skills or domains that separate us from the rest of medicine. I can't remember when I stopped worrying about that. The need is so huge we'll never put ourselves out of business (the lack of a business model may, but not the lack of need), and I think I've become far more comfortable acknowledging we are specialists, we do have skills that are rare (to be collected all in one person/team) outside of palliative care programs, and we should be very proud of what we do. Most of this I think I learned from my fellows, especially the mid-career ones, who came into fellowship knowing they were good at this stuff, and they were for hospitalists and family docs and EM docs, only to realize holy christ they had a lot to learn to function as a highly effective palliative specialist in contemporary medicine. Their angst helped me see that. The people who have been yelling for years we need to train all the generalists to have better generalist palliative skills are 100% right, andI do look back on my early queasiness about this with astonishment. 
  • I spend a lot of time, probably wasted, asking myself stupid questions like if I could help my colleagues do one thing differently/better, what would improve the lives of our patients the most? It's usually something like being more paternalistic. It's such a toxic word I know (I think it's probably best to replace 'bad paternalism' with 'authoritarianism' which I think is a better description of what we were getting away from in medicine in the late 20th Century), but the longer I've done this the more I've become convinced that it would greatly improve the lives of our patients and reduce suffering if we were more paternalistic. Probably a better way of stating it would be if we gave patients much more guidance and direction as they approach the end of life. Sometimes when I'm teaching residents about code status discussions and early on talk about if they think a DNR order is indicated they need to, are obliged to, actually tell the patient that, I am amazed at the pushback sometimes "you can't say that." It's entirely fucked up, if you don't mind me saying so. Despite the so-called primacy of autonomy in contemporary medicine, us doctors and clinicians walk around all the time telling patients what we think they should do, what we think the right thing is (it's time to start medication for your blood pressure, you need a colonoscopy, your mother needs to be admitted to the hospital, we need to start dialysis soon). Most of us have figured out a way of doing that without being authoritarian, I'm not talking about not discussing the options, the pros/cons, but we still blithely and routinely and without thinking twice tell our patients 'you need a colonoscopy,' 'I think you should be admitted to the hospital,' etc. I'm convinced the world would be a better place if more people had the same approach to discussing end of life care, code status, etc with patients. It's this weird thing where we start treating end of life or code status (in dying patients) decisions as some sort of human right, where people have unlimited autonomy to decide whatever, instead of a collaborative, therapeutic decision in which our knowledge of the medical aspects of it (what's realistic etc) are key.
  • You kinda get good at doing your work, and it's really easy to forget how tough it is for some of our colleagues in medicine and nursing. The patient is crying, the family are upset, they want things medicine cannot achieve for them, a young person is dying, a child is losing a parent, a family can't make a decision. You can be very, professionally aware of all that, in touch with it, thinking closely about how to help these suffering people, working closely with your great interdisciplinary team to figure out how best to help them, and it's just kinda doing your day to day job to do that, and forget that that sort of work is very foreign, very challenging, very outside of the 'safety zone' of some of your colleagues outside of palliative care. Not all of them, of course, but I still find myself surprised as I'm talking with a colleague and I realize 'OMG they are really being irrational about this situation' and realizing this space we are very professionally comfortable in is not a space they are comfortable in.
  • Upstreaming, mainstreaming, making palliative care concurrent, really is happening. In fits and spurts, piecemeal, but I am seeing so many more patients way upstream today than I was 10 years ago; and I'm seeing so many more 'survivors.' People who nearly died but the allogeneic stem-cell transplant worked, or 10+ year survivors of widely metastatic breast cancer. In this context I have had to learn opioid weaning and tapering - honestly this was a skill that I don't remember learning in my fellowship because it was just so rare. Now I do it all the time.
  • My relationship with opioids has changed, a lot. It would be too much to say I bloody hate the things - I don't, they are the best we've got for many patients much of the time, and I do spend more of my time coaching and supporting patients to actually take the opioids and work through the problems with them, but I've become more and more impatient over the years for something better. So many side effects, so many patients for whom they end up being maladaptive and harmful. Not so much patients nearing the end of life, or patients with painful conditions caused by ongoing clear tissue damage (eg cancer), but we see so many patients now who aren't quite in that category, and for whom the approach with opioids I learned early in my career (which continues to be very effective for my patients near the EOL, and for many of them with significant tissue damage pain syndromes [I refuse to say cancer pain because I think the carving out of cancer pain as something therapeutically or morally special is just bullshit]) is maladaptive, harmful. I've harmed people - it took me some years and some mentoring to figure this out, and to develop a different skill set to try to help these patients, and it's not easy but that's also been fun (learning new things). 
  • It's weird, but it was several years into my career before I realized how important it was to give my patients encouragement "you can do this", I don't remember if I just missed opportunities for it earlier, or if the preponderance of my patients were so terminal that it never came up and now that our patient population has shifted I do it all the time.
  • Methadone really is a helpful drug. I did not really appreciate that 10 years ago.
  • We need more and better research, clinical research. I'm not an investigator, I know it's easy to complain, but I've become really demoralized with the lack of good clinical research. Like, for instance, what the actual risk of QT prolongation is with methadone, etc - so many people are super queasy about it but the actual risk hasn't even been defined, and expert-panel consensus pronoucements don't count.
  • Advance directives and advance care planning, especially in patients who aren't living with serious illness, should be considered a novel intervention that should be investigated, but not some sort of foregone conclusion as being helpful. The research showing that it is helpful is just not there, it is very limited, and actual trials of advance care planning have been few and have struggled to show actual improvement in patient-relevant outcomes. I want to be clear that I very very much believe that talking with patients with serious illness about their future, options, choices/decisions/scenarios they may be faced with, preparing them and their families for that - that I believe is a very good thing. A profoundly good thing which would transform medicine if we did it better. However, health systems spending millions of dollars on getting people to complete forms should be considered an unproven, investigational intervention. When I talk about this, and it's an uncomfortable thing to talk about in palliative circles, I'll often ask palliative care people - How often are you just like "Oh yeah, I am so grateful that patient had a health care directive! It really helped their situation!"? The answers range from 'rarely' to 'never.' I have appreciated Rebecca Sudore's and Tara Fried (and colleagues') discussion of this over the years, and research, on how we need to think about ACP completely differently (and, I'd continue to add, consider it a novel intervention which needs investigation, prior to widespread use/investment). I also think we probably need to reconsider the goal of advance care planning as we research it, and move away from the goal being somehow examining congruence between what people say they want on paper and then what happens (too much research has focused on this), and instead reconceptualizing it as an essentially palliative intervention to reduce suffering (emotional, but also perhaps physical) for patient and family. I do think that line of research has promise, but getting people to decide things in advance, not so much.
  • I'm not sure palliative care is going to save American medicine, but I do think the model of how palliative and hospice teams do care (which is not a model we invented or own I need to acknowledge - geriatrics teams, long-term care teams, rehab teams, some primary care programs, & many others do this and were doing this before us) is one of the only ways to make contemporary medicine a humane place to work. I'm talking specifically about doctors and medical practitioners here I guess. I don't pretend to 'know the solution' for what ails medicine in 2016, but the current environment we have now in which docs are still mostly measured on volume, and how well we composed a nearly-worthless-trash-filled-but-highly-billable Epic note is a catastrophe. Pure shit. Creating interprofessional, high-functioning health care teams which are measured on patient-relevant outcomes and not volume and how complete your fucking notes are, in which the physician's role is to be a medical/medicine-leader, support other clinicians' medical work, and doing high-impact but lower-volume complex clinical patient care has got to be the way forward.
  • Even more now than 10 years ago, I am just so goddamn grateful that I get to do what I do. Not some of the crummy paperwork/admin stuff, but being able to care for patients as part of a palliative care team, to practice medicine in this way...I feel so lucky. It's good work, and I'm glad I stumbled into it a decade ago, and I'm so grateful to the people who taught me during my fellowship (I still quote you to this day Lisa Marr, David Weissman, Linda Blust, Jo Weis, Sandy Muchka, Joan Golden, Ruth Drazewski, and many more), and those who have taught me in the subsequent years to. It's a good gig, stamping out suffering.
Drew Rosielle, MD is a palliative care physician at University of Minnesota Health in Minnesota. He founded Pallimed in 2005. 

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